Beckwith-Wiedemann Syndrome | Boston Children's Hospital (2024)

FAQs

Can people with Beckwith-Wiedemann syndrome have kids? ›

They are often larger than their peers during childhood, but their growth slows as they get older. By adolescence, growth tends to normalize and cancer risk decreases. They generally grow up to be adults of above average height. Adults with these disorders can lead a normal life and have healthy children.

The prognosis varies depending on the symptoms' severity, molecular subtype, time of diagnosis, and occurrence of BWS-related tumors. Most patients with BWS have an average life expectancy. Adults with BWS may have less pronounced growth or facial abnormalities.

Tumors develop in about 10 percent of people with this condition and almost always appear in childhood. Most children and adults with Beckwith-Wiedemann syndrome do not have serious medical problems associated with the condition. Their life expectancy is usually normal.

Is BWS a developmental disability? Unless a child has had untreated low blood sugar or other medical complication, there's no indication that Beckwith-Wiedemann Syndrome affects children's intellectual ability.

In addition to macroglossia, BWS may be characterized by other differences of the skull and facial (craniofacial) region. Such features may include distinctive slit-like grooves or creases in the ear lobes and dimples on the back of the ears (ear creases or pits).

Treatment for Macroglossia

In cases where the cause isn't clear, medical therapies haven't been shown to be useful. In mild cases of macroglossia, speech therapy may improve issues with speaking. In more severe cases, your healthcare professional may recommend surgery to reduce the size of your tongue.

Beckwith–Wiedemann syndrome (BWS) is a rare overgrowth disease and is not usually associated with intellectual delay. Living with a chronic illness condition such as BWS, however, might affect emotional-behavioral functioning and psychosocial development.

Beckwith-Wiedemann syndrome (BWS) can affect many organ systems and the brain in several ways. There is an excess of cerebrospinal fluid in the brain, causing the brain to swell and increase pressure on the brain tissue.

One of the most common features of the condition is macroglossia (large tongue size). Macroglossia can cause difficulties with feeding, speech, the development of the teeth and jaws, and increased drooling.

Beckwith-Wiedemann syndrome has no cure, but some treatments can help ease its symptoms. The most common Beckwith-Wiedemann syndrome treatments include: Medicine: Some infants require medicine for low blood sugar that persists past their first month.

What are the long term effects of Beckwith-Wiedemann syndrome? ›

This unusual growth, known as hemihyperplasia, usually begins to slow by age 8. BWS can also lead to an increased risk of certain childhood cancers, most commonly Wilms tumor (kidney tumor) and hepatoblastoma (liver tumor).

Learning difficulties are not part of the condition other than in the very small number of children with a complex chromosome abnormality.

Information. Macroglossia is most often caused by an increase in the amount of tissue in the tongue, rather than by a growth, such as a tumor. This condition can be seen in certain inherited or congenital (existing at birth) disorders, including: Acromegaly (buildup of too much growth hormone in the body)

If you have macroglossia, your tongue may stick out of your mouth. You may also have trouble eating, breathing or talking.

Macroglossia is the medical term for when a child is born with an enlarged tongue. It is one of the most common features of Beckwith-Wiedemann Syndrome (BWS), affecting around 90 percent of children with the congenital disorder.

Recent data in humans and animals suggest that assisted reproductive technology (ART) might affect the epigenetics of early embryogenesis and might cause birth defects. We report the first evidence, to our knowledge, that ART is associated with a human overgrowth syndrome—namely, Beckwith-Wiedemann syndrome (BWS).

The most common features of the condition include: Increased height and weight at birth or in childhood. Asymmetry of growth, for example one arm or leg larger than the other (hemihypertrophy). Large tongue size (macroglossia).

Beckwith–Wiedemann syndrome (BWS) is an imprinting disorder that can be prenatally suspected or diagnosed based on established clinical guidelines. Molecular confirmation is commonly performed on amniocytes.